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Editorials

Patient and public involvement in covid-19 policy making

BMJ 2020; 370 doi: https://doi.org/10.1136/bmj.m2575 (Published 01 July 2020) Cite this as: BMJ 2020;370:m2575

Read our latest coverage of the coronavirus pandemic

  1. Tessa Richards, senior editor/patient partnership,
  2. Henry Scowcroft, patient editor
  3. on behalf of The BMJ’s international patient and public advisory panel
  1. The BMJ, London, UK
  1. Correspondence to: T Richards trichards{at}bmj.com

Absent in the early stages of the pandemic, it must now move centre stage

The covid-19 pandemic saw statutory policy commitments to patient and public involvement and shared decision making in health systems abandoned, the “nothing about us without us” mantra left hanging in the breeze.

Decisions had to be made fast, but policy makers’ choice of expert advisers excluded those with expertise rooted in lived experience—patients, families, and frontline health and social care professionals. This was regrettable. Their input would have helped to mitigate the predictable adverse effects of massive service reconfiguration and lockdown, and emphasised the need for clarity on which services would be suspended and which would remain accessible.

These steps would have reduced the anxiety, helplessness, and reticence to use services that followed. It might have prevented at least some of the excess morbidity and mortality associated with pandemic responses, particularly among elderly people, those with long term conditions, and those in lower socioeconomic groups.12

Patient and civil society advocacy groups may have lacked seats on expert committees but took the lead in providing information, advice, and support for their communities.3 They have lobbied for a voice in policy making,4 for a focus on inequalities,5 and for policies to take account …

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